January 31, 2013

We're looking at my brain. Or, rather, at the MRI images of my brain that were taken earlier in the day (yesterday, that is). This is after my doctor's done the series of neurological tests that I've become so familiar with -- grip his hands tightly, pull him toward me, push him away, raise my knee and see if he can push it down, touch his finger with mine and then back to my nose. He checks my reflexes and how sensitive different parts of my body are to the touch of a pin. He has me walk on tiptoes and then toe-to-heel. If I stand still, close my eyes and hold my arms out in front of me with my palms up, do I start to tip forward? (I do, a little.)

I joke to the med student observing us that I'm convinced the reason people go into neurology is that all of the little tests are so interesting. The doctor agrees that I have improved since he saw me six weeks ago. Now we're looking at the MRI images and as he scrolls back and forth through my brain he confirms that it is completely normal and healthy. That's good, but my brain hasn't been part of the problem.

When he puts the scan of my spinal cord up next to the similar image from nine weeks ago, the challenge is immediately apparent. The expectation had been that the megadoses of steroids would greatly reduce the inflammation and swelling. The hope was that he could then make a definitive diagnosis on the basis of the image alone. But there is still substantial swelling. That in itself is surprising and it means that we're still looking at a number of possible causes. More examination is necessary. He'll present my case to a conference on Tuesday and see what his colleagues think. Then he'll call me with a recommendation on the next steps.

I'm a firm believer in the power of low expectations. I don't like disappointment, so in general I try not to get my hopes up about things. (I tend, for example, to frequently have good experiences at professional conferences, because I expect so little from them.) So I didn't really expect to get the definitive diagnosis yesterday. We knew from the beginning that diagnosing the cause of transverse myelitis is a difficult challenge. I do have more confidence than I did initially that we'll narrow it down.

In the meantime, I continue to make progress, although it can be frustratingly slow. It's as if I've got 50 yards to travel and I'm managing a couple of inches a day. On any given day the difference between where I am and where I want to be seems as vast as the day before. It's only when I compare today to two and three weeks ago that the progress becomes apparent. I can walk up and down stairs without steadying myself on the rail. Although my left hand is still very weak, I was able to trim the nails on my right hand this morning without thinking about it -- six weeks ago I couldn't do that at all.

I'm keeping up my normal work and travel schedule (I leave for DC next Tuesday and I've got a couple of trips to the UK scheduled for March and April). I'm walking to all of my on campus meetings as I usually do -- I just have to allow about a third more time to get from place to place. My typing is improving, and I can form guitar chords, even if I can't move between them fast enough yet.

He explained the muscle twitches this way -- normally, when you want to activate a muscle, the signal goes through the nerve fiber from the brain to the correct muscle, clean and direct. But in my case, because some of the myelin sheath that encases each fiber has been eroded, the signal jumps fibers and activates other muscles as well. So I get twitches, or I'll stiffen because two muscles in opposition are both flexing. It lasts only a second or two and the muscles sort themselves out and I go on. Annoying, but apparently not something to worry about.

When the doctor was doing his assessment he asked me for examples of things that I could do three months ago that I could not do now. There's really not much, if you allow for the fact that many things take longer.

Every morning, when I write in my journal, I'll write a bit about how I think I'm doing that day, but those questions are occupying less and less of my time. I don't feel normal yet, but I'm doing normal things.